[Image : Visitors viewing We Care: A Video for Care Providers of People Affected by AIDS, WAVE (Women's AIDS Video Enterprise), 1990. In AIDS at Home: Art and Everyday Activism, curator Stephen Vider, Museum of the City of New York, 2017. AIDS at Home explores how activists and artists have mobilized domestic space and redefined home and family in response to HIV/AIDS.]

On Care, Activism, and HIV

ted kerr & alexandra juhasz

Since 2014, academic and filmmaker Alexandra Juhasz and writer and organizer Theodore Kerr have been engaging in conversation about the confluence of the ongoing AIDS crisis, history, and representation. They began their first published conversation (1) by reflecting on films from across the ecology of AIDS media, looking at trends, absences, and meanings. Crucial to that conversation and ones that followed was thinking around the Second Silence and the AIDS Crisis Revisitation. For Kerr, the Second Silence is the period that comes after the release of life saving drugs in 1996 and continues until around 2008. In this period, the production of AIDS related culture slowed down, as did related dissemination and discussion. It was an echo of the first silence in which the Reagan administration and the media at the time were largely quiet around the then emerging crisis, which allowed a virus to become an epidemic; during the Second Silence stigma and discrimination became more insidious. The Second Silence broke with the dawning of the AIDS Crisis Revisitation, a new wave of cultural production starting late in the first decade of the 21st century, one rooted in looking back at early responses to HIV/AIDS primarily through the lens of white middle class gay men and their communities. Within this lens, Juhasz and Kerr posit, the crisis is often represented as something that can be and was overcome with medication and personal ingenuity. Seldom included within the Revisitation is work that wrestles with the intersectional foundation of the AIDS crisis and the examples of activism and other forms of critical response that addressed AIDS in its full cultural, community, and political complexity.

To expand their vision, Juhasz and Kerr have been re-focusing their analysis away from more well-known cultural objects about AIDS and instead, using Juhasz’s 1995 book AIDS TV: Identity, Community, and Alternative Video (Duke Press, 1995) as their guide —as well as the video archive that she had amassed in the first years of the crisis to research and write it—they have been diving into work that more closely mirrors the AIDS intersectional roots and responses that are central to the history and current climate of AIDS. Critical to their conversations have been the similarities and differences that each bring to the conversation. Juhasz was an active member of the AIDS response in NYC in the 1980s and 1990s. She lost friends, participated in demonstrations, created work with collectives, and made videos. The work she did then and now honors the people, time, and work of the past while also bearing witness to and activating connections and divergences in the present. Kerr came of age in a different time and place. For him, as a gay man, AIDS was an ever-present cultural inheritance, hanging over his head, throwing shadow on every path ahead. But by the time he became involved in AIDS work at HIV Edmonton, the AIDS service organization in the Canadian city where he grew up, there was little to no gay community to be found (at least in the AIDS service world). Instead, there was a multicultural, multiracial, mostly female run response that focused on first nation and immigrant communities and people who were active users of illegal drugs, who were living in poverty, as well as dealing with mental health issues and unstable housing. For Kerr, this was a vastly different AIDS world than he had seen represented, but as he would come to find, it was directly in line with less-known aspects of AIDS history and the stories the were rarely preserved and passed on.

Bringing together their collective experiences to AIDS related media, Juhasz and Kerr have sought to consider the patrimony of AIDS history (2), looking at how and why some work gets saved and remembered, and by whom, while other work is hard to find, forgotten, and when resurrected often left uncontextualized. In the conversation below, they build on and attempt to round off, their ongoing project by discussing the twin and sometimes inseparable acts of care and activism that are foundational to the ongoing AIDS crisis and acts of representation about it, themselves often understood as care.

ALEXANDRA JUHASZ: Let’s start by talking about how our encounters can be seen as a form of care. In reaching out to each other, we have found a conversation partner with whom we can listen, bounce ideas off of, and continue to think, consider and propose along side with. Over these many interactions, we have built not just ideas about AIDS but a collaborative thinking and writing process that allows for our differences. We come together to ask and learn how media about AIDS can best hold stories that center the lives of those most under-seen: people of color, women, trans people. And once it is made, overcoming many obstacles to get there, why from one generation to the next there is inevitably, perennially, a quick and ready loss of the ideas and experiences produced about these least-seen people.

We are not alone in trying to make sense of these questions and gaps. There are many projects right now, done with care and exploration, in video, dance, theater, and other artistic and social registers that seem to be engaging in an inter-generational structure of remembering, revitalizing, sharing and seeing anew much like our ongoing work together (3). In this work, something like a model emerges: someone of younger generation turns to their HIV-activist elder seeking information and community around a “more authentic” explication of AIDS activist history and then is shocked and pleased to learn how much good work was actually accomplished before. They then often ask: “why didn’t I know?” The elder then is often compelled to wonder: “what did we do wrong, given that we worked so hard against systematic forces like racism and sexism and homophobia and barriers to access to health care or self-representation, and we felt pretty successful at the time, and yet these very same forces serve to keep our acts of survival hidden?” They look at the younger person and think to themselves and then outloud, “Looks like we better do some multi-generational, multi-voiced re-writing and remembering,” and then later find themselves adding, “And looks like we might need to think together about how this feels : to know and not know, to be willing to share, to admit what we did wrong, or what we didn’t or don’t know, to acknowledge that HIV/AIDS changes, that no one person, or moment, defines this experience.”

And I can tell you from my side of things, this model of dialogical care in which we and many others are working is rewarding, exhausting, productive, frustrating, sad, and energizing. As this cycle of discovery between us transitions into a long term project, it seems that along the way we have created a foundation of mutual understanding, while also unearthing and participating in projects that are at once about video, remembrance, and HIV/AIDS, as they are about means and modes of caring, me with WAVE (The Women’s AIDS Video Enterprise) and you with the What Would an HIV Doula Do? collective.

THEODORE (ted) KERR: It is no accident that in the years we have been speaking about how HIV/AIDS gets understood and represented, we have both dug deeper into AIDS related projects where care is central. To make sense of HIV/AIDS it is crucial to wrestle with what we mean by care and to consider how care is done, represented and passed down. Many of us have been quick to think of AIDS activism as the model instantiation of the history of AIDS, but more complicated and less considered is the idea of AIDS caring, which sets the stage for this fourth conversation.

A few years ago I was hearing a lot about doulas. I was meeting people who did it for work, and reading about how not only were there birth and end of life doulas, but also abortion and gender doulas. Being entrenched in the AIDS response I wondered if there could be a doula focused on HIV? I set out to think about this question with others. In 2015 I organized a one day think-tank where I invited folks involved in social justice activism and work to discuss many AIDS related topics, including a session asking: What Would An HIV Doula Do? It was lively and meaningful, and those of us involved ultimately ended up creating a collective that took the question as its name (4).

Two years later the What Would an HIV Doula Do? (WWHIVDD?) collective has as a working definition of doula: a person in community who holds space during times of transition. We see living with HIV as a series of transitions that do not necessarily begin with testing positive and do not end once you get on medication. This idea of holding space can mean many things to different people. At that first think tank, which is documented in a transcript online, writer and chaplain Michael Crumpler talked about how when you are living through trauma you can lose track of the assets and capacities you have worked hard to cultivate. In these cases, someone holding space for you can mean a person reminding you who you are, what you can do, and where to go.

When we first started, we had this idea that we could be a front line organization, that we would be an evolution of the buddy system or peer mentorship that have been an important part of the AIDS response. Or we thought maybe we would be community care workers or chaplains you could text. And these discussions are ongoing. But something else is happening in the meantime. We are having to hold space for ourselves. We are doulaing the system and ourselves—a term that comes to us from activist, doula and powerhouse, Jessica Danforth. As a group of people our awareness of HIV is all over the place. Some people are still working with a 1996 level of information about HIV, others are up to date because AIDS is our life or our job. Together we are working past the wrong information that circulates and are pushing past prevailing silences that still surround HIV. We are addressing issues such as HIV criminalization, HIV testing, and ways HIV is being remembered and disremembered within mainstream culture. Along the way we are also bringing together people who have not seen each other in generations, mourning people who have been largely forgotten, and introducing people across generational divides. Through our meetings, public programs, and online presence we are working to make AIDS-aware communities in the 21st century (5).

AJ: WAVE is one of those groups from the past that WWHIVDD? have been engaging with. We’ve now had two immensely productive public encounters where WAVE shows and talks about our work from the early 1990s and then we connect this to needs and activism for today. One was a workshop at New York Live Arts in which collaboratively we made a timeline of personal AIDS histories. This allowed the iconic and the personal moments of the epidemic to sit together. This event ended with an impromptu dance party to WE ARE FAMILY. The second event was a screening at a small independent theater in Crown Heights called Video Revival. We used my archive of tapes to screen We Care: A Video for Care Providers of People Affected by AIDS (WAVE, 1990) and Party Safe with Bambi and DiAna (Ellen Spiro, 1992). You and I had many ideas about this screening, but what emerged after the videos showed, was a discussion around sex education and of course a meditation on what does it mean to have women of color both in front and behind the camera. How does that change the story that gets told about HIV, and the way we all receive it. In these interactions it has been so clear to me how the foundational premises and practices of WAVE are fully aligned with the current doula work. I built WAVE in conversation with the community-based AIDS organization Brooklyn AIDS Task Force (BATF). I had reached out to them, after acquiring a grant that would support the project from the NY State Council for the Humanities (thinking today about the ongoing threats to the NEH, and also that community-based AIDS educational media-making by and for urban women of color doesn’t seem to be the kind or project our stifled and current humanities granting can support—the person who shepherded my grant application was Coco Fusco!—we see how climates of cultural support, and related ideologies of media practice, really affect what can be and is made). After making three very early tapes about issues affecting women in relation to HIV/AIDS for the Gay Men’s Health Crisis “Living with AIDS Show,” I knew that I wanted to create an AIDS media production model that would facilitate media by and for (not just about) the communities of women most impacted, and least represented, that is urban women of color. The model for WAVE (which I discuss in great detail in AIDS TV) put media literacy within an AIDS support group, so that as we think and learn about theories and practices of representation together this is occurring in a safe or even therapeutic space where the social and personal needs of often disempowered and new media makers is part of the process. This kind of media making demands time (the project was over six months), support (the participants were given bus-fare, food, and a small stipends), institutional infrastructure, and room to explore the complexity and beauty of community. That process doesn’t just enable a tape, it is in the tape in what we show and know and how we become authorized to say it (in the case of We Care, by forefronting the expertise of urban women of color about AIDS both in front of and behind the camera). Coming to video voice is no simple thing. We did this in a collective where the first step was building personal, and then communal agency to speak publically and artistically about what we already lived.

TK: I love how WAVE makes visible the multiple ways that community was the response within the early AIDS crisis, and the people involved and their needs needed to be attended to. One of the goals of WWHIVDD? is to both draw attention to the role that community has always played in AIDS work, but also push forward the role of community in the face of a much needed but deeply problematic professionalized response. As you well know, long before Highly Active Anti-Retroviral Treatment (HAART) was released in the mid to late 1990s, something like an AIDS industrial complex began. AIDS Service Organizations grew in size, Lesbian and Gay non-profits took on AIDS in a serious way, and a once cottage industry of responding to AIDS ballooned into multiple marketplaces and responses.

AJ: When I worked on WAVE, BATF was much more like that deeply-embedded, by the seat of our pants, much-needed model for AIDS related care, across a complex amalgam of needs, than the AIDS Inc. we would come to know. That said, because they were working from crisis, and extreme need, they were flexible, responsive, and deeply embedded in the primarily African-American, Caribbean, and Latino communities they served in Brooklyn. Also, they had way less resources than the well-funded organizations in town. A lot of the scrappiness came from lack of resources!

TK: Weaved within all that was activist informed community, acting often as a check and balance for those who could possibly lose the human element of the work. But with the release of medication and the incoming of larger dollars from state and private funders, community fell away. In its place was a much needed but increasingly bureaucratic system. For some, the loss was fine; with a new lease on life, they did not need the AIDS community they had once cultivated. With proper care, HIV for them could be medicalized and compartmentalized and they could move on. That is one story of HIV, and one, as we have discussed, that is most seen or even motivates the AIDS Crisis Revisitation.

AJ: Now that AIDS “is over” (for some!) it is safe to look back at what it was.

TK: But as we know, for others, for whom medication was only one pillar of support they needed in the face of being HIV+ in America, the crisis was not over, it was very much the same or made worse because complex realities of HIV were no longer being broadcast or privately attended to. This is the start of the Second Silence. At the very same time that intricate stories of AIDS most needed to be driven home for maximum impact, it was erroneously suggested that AIDS was over.

AJ: The Second Silence buried for many of us our passion, community, and our previous work and analysis because the social, political, infrastructural, and as we’ve been arguing technological conditions that supported it went away. Everyone went home and mourned, or raged, or learned alone.

TK: Right! And it’s in the face of that last turn that we now found ourselves immersed in an interesting tension. In the face of inaction, care can seem like activism. Coming out of the Second Silence, AIDS Crisis Revisitation work might seem like progress. I understand people’s need to see films like How to Survive a Plague (2012) and exhibitions like Art AIDS America (2015-2017) as activist in nature; in the face of apathy, any action can seem heroic. But I am not sure that not being apathetic is enough, that is to say I am not sure representation is enough. And I am not sure we need heroes at all. Much of the films and art exhibitions about HIV were clogged with white supremacy and gay exceptionalism, erasing many people’s experiences with HIV, and further pathologizing gay men. These Revisitation movies and exhibitions give us a certain kind of gratification because they put on film and on walls actions we can see, resulting in change. But how do we begin to account for all the work that can’t be seen, or that is for some less exciting to see? Asked another way: how should caring be named, seen, applauded, or noted? Which relates to thinking you have done around how action within the Revisitation gets named and discussed.

AJ: I think you are referring to some of my recent work on the everyday and being at home with HIV (6). I’ve stressed that it’s important to think about activism as something more than direct action, or only as street-based tactics. Not everyone feels comfortable in those spaces; not all have permission to or interest in engaging in public, in defiance, and in this way and in these spaces. On the other hand, I have also wanted to signal that making and moving words and images on the internet is itself not activism. This seems to push people’s buttons because they want this action to be acknowledged as real and helpful, which it is. That is why I have named the making and circulation of content on the internet proto-activism in that it is a useful step to naming, knowing and sharing analysis, knowledge and experience. But for me, activism is one of many forms of carefully thought-out, communal activity in the face of making a change for the future. In the face of the isolation that underwrites most internet actions the kind of inter-personal, body-based caring that happens between people sharing time and space becomes increasingly valuable and rare.

TK: And this is where I have found working with WWHIVDD important. It has me rethinking the lens through which I have been looking at AIDS work all along. A few years ago, a group of activists and cultural workers were invited to host an event to promote current AIDS activism. This was at a time where there was a lot of excitement and energy around ACT UP including reliving old actions, and photo shoots being published of activists from back in the day. Amidst all this people were feeling left out, people whose lives were fundamentally changed by HIV/AIDS and who had played a role in how AIDS was addressed in the US but who maybe were never dragged by police at a demo, never deemed photogenic enough to have their image taken at a meeting, or did not deliver an impassioned speech about the crisis—at least not one captured on tape. AIDS activism was getting widely celebrated in our time now, and in planning the event we wanted all people to feel included, and honored. So we created an event stressing that everyone was an activist or had the power to be an activist, and that an activist was not just the person who got all the glory but the scores of people that make every action possible. In the end, the event we hosted was successful: people had a chance to speak about how they have contributed to the movement and we facilitated a teach in around activist tactics.

AJ: The function of supporting a movement by cooking, planning, taking care has always been taken up disproportionately by women and those who take pleasure or power in these “female” roles.

TK: What strikes me now is that in all the planning of the event, none of us stopped to think about how we could make more visible contributions to the AIDS response that were not only activist in nature. While we were trying to make everyone feel seen and valuable, we actually ended up participating in a narrative that suggests activism is the only action that matters within a movement, thereby erasing the other kinds of labor that make social change possible, labor that gets lost within much of the Revisitation.

AJ: I have thought long and hard about the ways that media making is an integral contributor to movements for social change. As is direct action. Women have done a great deal of the behind the scenes labor of movements, families, care giving and world making. We don’t need to call this “activism” to know how much we love and need this!

TK: As part of the WWHIVDD work, I am able to reconsider all of that. I have been doing oral histories with people within the response, often folks that I see as being what we may call HIV Doulas even if they have never heard the term. These are people who have been doing right by others in their community since they were kids. Through a series of events—most often commencing with their own sero-conversation—they find themselves as part of the AIDS response, continuing along to help others just as they have always done. This can mean anything from ensuring the local bar has condoms, to helping people access services once they test positive and don’t know who else to talk to. This everyday sort of unpaid community-based care has always been part of the AIDS response, and I think has long been represented in AIDS related media, both in the past and the present. But we don’t always recognize it or know what we are seeing. In a conversation with WWHIVDD about somatic memory and information in bodies around activism, artist Julie Tolentino, who like yourself is often compelled or invited to rewatch AIDS activist tapes from the 1980s and 1990s, spoke about her experience of AIDS related videos from the past. In an email recently she recounted how she shared with us that day that as the AIDS videos from the past play she recollects what she calls, the “sedimentary layers of awareness developed over time, at the time, when things were intense, heated, aggressive.” This way of viewing lends itself to, as she describes, “ a kind of looking around the edges and just outside the center, allowing viewers to witness the anxious and willing (and working) space of activism: watching readiness and willingness as it develops in the body; the witness to one finding themselves as finding a person, and a place, of support; witnessing someone in the frame as they readying themselves : changing their position, looking around being eyes and padding, reassuring another or themselves, carrying important meds or inhalers; and the people that have a kind of hand-hold to the haptic scene, keeping eyes on their compatriots.” For Julie, “there is learning to be found here, in the bodies of the center frame to be certain, but also in the information, people, care, expertise, passion, worry, energy that surrounds and spills from the edges towards the center.” As she describes this, I think about how that place that edges toward the center is also often where one can see the tape-makers, carrying a camera, one eye focused on the field of the present and recording it for the benefit of the future.

AJ: This is a beautiful way to think of this labor, and the role of caring within the ongoing epidemic: as the intentional making of support systems by frame shapers, those devoted to holding space for comfort, memory, and love that enables more; the doulas and the media makers.

3 // We are thinking here of the many feature documentary films, exhibitions, books and theater productions. And we are also thinking about undertakings such as Lost & Found: Dance, New York, HIV/AIDS, Then and Now, a multi pronged series of events curated by Dancespace Projects in the winter of 2017.